quality, compassionate advocacy for children with special learning needs

What you need to effectively move forward

If there is one thing I am repeating to families more often now than ever it’s this: you need to have your independent evaluations lined up when you are advocating for different services to the school district. Not only are your independent evaluators your “experts”, they are who I rely on (through reports, conversations, and sometimes attendance at meetings) to clearly articulate what your child needs. They are folks who, so long as the parent has consented, I talk to, typically on cell phones and whom help me understand the history and needs, telling me exactly what they feel comfortable saying and in what context. As well, they will often share what school districts they feel give them a fair shake, and the ones where their recomendations are attacked.

As a parent, you NEED to pick evaluators who are both a) highly-regarded and b) willing to work as part of your child’s team. Most of the folks who are “the best” do this without hesitation, deeply caring about their patients/clients. If you connect with a great clinician who refuses to collaborate with the school district, you typically end up out-of-luck.

As part of a BSEA hearing process, one of the hearing officers was talking about the difference between accepting reports as evidence and having the evaluator there in front of him. He voiced that he wanted to see people, hear their views, and have them available to answer his questions, and that this level of engagement is weighted more heavily in his decision making. You know what? . While, that is an extreme example, as the vast majority of all cases, even those where you are working with an educational advocate, never touch the hearing process, the counsel makes perfect sense. The value of those words can not be repeated often enough. I’m suggesting that means: people win cases, reports don’t.

Having someone on speaker-phone at a team meeting is better than just having a report in front of you, but it’s not often that effective. One of the things I notice is that parents sign releases, at the request of the school district, to allow schools to talk to evaluators (I am not talking about medical doctors, here). The school district then, for whatever reason, never contacts them.

When you get to your team meeting, the response from the district is *always*, “well, they didn’t call us, either”. It then can crumble into a “he said/she said” high-school-ish fight where neither the parents nor the district will work together to help get the evaluator’s opinion and recommendations to the full team. The parents are usually frustrated, after all they have typically paid a lot of money for an evaluation. Whereas, the school district has no reason to want to hear the evaluator’s recommendations if what they recommend is radically different than is what is currently being implemented.

Parents also get mad at their advocates about this. I can do my job effectively with the right tools; without the tools and with stubborn evaluators, it is very challenging to obtain the results the parent is seeking. While I’d prefer parents vent to me, and not the district, it is uncomfortable to have to explain the same thing to the same family, sometimes for years.

How do you find an evaluator who is both a fantastic clinician, but who also will collaborate with the team? In my experience, you choose independent (ie: not hospital based) evaluators who have flexibility within their schedules and who can schedule all pieces of care (assessment, parent conference, team meetings, classroom observation, etc.) themselves. As an example, a high-quality neuropsychological assessment runs about $2900, and includes parent feedback sessions, direct testing, and the report itself (as well, it also includes a short amount of consultation to me, the educational advocate). There are plenty of excellent evaluators who charge a flat fee (usually $125-$175/ hour) for attendance at an observation or team meeting. I always say, beware of clinicians who charge their full rate for travel time. I am not paying an evaluator $175/hour to drive from their home to my kid’s school. I’m just not, although I am happy to pay reasonable travel expenses.

In general, you will get more personalized service, and reports back quicker, if you work with a small practice or someone who works alone.

In the case of a medical doctor, there are amazing, expert physicians who practice developmental medicine, metabolism, neurology, psychiatry, and other specialties, who take the time to speak to both folks like me, as well as to districts, if it’s in the right context. Typically, in communicating with a school system, that is with the parent present because medical records are protected by HIPPA and should never be emailed, mailed, or even discussed without the expressed consent of the parent, and usually only in a conversation that includes the parent and/or advocate.

Similarly, I work closely with a student’s mental health clinicians and they often attend team meetings or due process proceedings. Don’t be fooled: there is a difference between service delivery in a medical model vs. and educational model. However, school districts tend to dismiss anything a medical doctor says and that is not okay. A child’s (medical) diagnosis does affect his or her ability to learn and should be considered by the team in IEP (or 504) development and service delivery.

I can appreciate that this is depressing for families. Parents shouldn’t have to pay out of pocket for experts, after all the school’s assessments are funded by your tax dollars already. (Ironically, if you advocate to the BSEA for your child, it’s your tax dollars which are also paying for the school district’s lawyer). You shouldn’t have to choose evaluators based on their track record and/or willingness to work with schools. But, you do have to this, especially if you are in disagreement with your child’s school-based team members.

Be willing to be open and make changes to your child’s outside team if those changes are likely to gain for your child what they need to be successful learners who can access the curriculum. And, don’t shoot the messenger who tells you this. Try to make relationships work, but spending your time and energy convincing your child’s clinician they *should* do more, is wasted energy and becomes a “battle of the wills” which I have yet to see a parent win. In contrast, it typically causes the clinician to pull further away from even the idea of collaboration.

As in all things, buyer beware. Choose independent evaluators with care, and make sure you have a conversation before they start working with your child about what the expectations are. If they express hesitation even after a collaborative discussion, you’d be wise to start looking elsewhere.